MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 31 October 2009

Thank you so much for all of your amazing support on this very difficult of weeks, following the bombing of St George's Bagdad last Sunday. Your kind messages and financial support have been both humbling and deeply encouraging, and your prayers, both those uttered in churches around the world and in those spoken in the secret of your hearts, have been answered wonderfully.

In the space of a few seconds last Sunday, St George's sustained terrible damage, not only to the windows but also to the structure of the church and to the sophisticated medical equipment within.

Since then, our Iraqi church members have worked so hard to restore the church and clinic to its former glory. Tomorrow the church service will go ahead as normal. Next week the clinic will reopen. That is an amazing testimony to their hard work and to your generous support.

This week we received or were promised half of the money needed to complete the restoration. We are joining with the congregation of St George's to pray G-d will prompt donors to pool together and provide the outstanding $100,000 in the week to come, so that we can resume the usual essential services that the church and clinic provide.

For my part, I was very sad that I was not in Iraq at this time, to be with my people in their time of greatest need. In reality though, if I was not in the UK I would not have been able to find the funds that the people so desperately needed. G-d's ways are indeed not our ways.

Today is the eve of All Hallows day, or All Saints day, which is the day when we give thanks to G-d for the Saints. It's all about G-d and his faithful servants who have gone before us to heaven. I find it very difficult that so many Christians choose to celebrate Halloween. Christians should not keep this festival of darkness. Why not host a 'Light Party' instead, celebrating G-d's glory?

So Professor David Nutt has been sacked as the government's chief adviser on drugs, because he criticised the home secretary and the prime minister for not following his advice that cannabis should be classified as the lowest category C drug. I don't have much sympathy for him. Not that I'm disputing the evidence of the comparative harm of different drugs, though it's a bit naïve to compare drugs which have been legally available for centuries such as alcohol and tobacco with those that are illegal (and have a vocal lobby trying to make them legal). What the professor should be able to grasp is that advisers advise but politicians decide. And, as any afficionado of West Wing will appreciate, political decisions are seldom pure and never simple. He is quoted as saying: 'I’m not prepared to mislead the public about the harmfulness of drugs like cannabis and ecstasy. I think most scientists will see this as a further example of the Luddite attitude of this government, and possible future governments, towards science.' As I recall, at the time of the classification of cannabis as category B by Alan Johnson's unfortunate predecessor, there was no secrecy about the advisory committee's contrary recommendation: in other words, his view was already well and truly in the public domain. And as Sir David King, the former government chief scientific adviser, rightly pointed out, it's not the role of an adviser in the pay of the government to criticise ministers - any more than civil servants may.

What struck me about Prof Nutt's comments is the dangerous subtext - that science should be all-powerful. If scientists say so, it must be true. If scientists say, 'Jump!' then we all have to jump. For one thing, scientists aren't always right, and the advice they give is not always ethical. They, like the rest of us, work within their own moral framework. No one, not even scientists, works without presuppositions. The idea that science is morally neutral is a fallacy, because it's carried out by human beings. And neither is 'Science' a moral absolute. That's because science is always provisional. The boundaries of our knowledge are continually expanding and yet always finite. Don't get me wrong! Scientific study is a wonderful thing. Personally I regard the urge to explore, research and understand as God-given, even as a form of worship - and if you don't think in those terms I regard them as the most human of activities. Like everyone with 'terminal' conditions, I hope that medical research will one day crack the code of MND and discover a cure. But actually that's not what life's all about, although it would be easy to think so. Life's about how we live with each other and how we care for each other - and that's not reducible to a statistical analysis or a formula. It's far more complex than that.

I'm sitting in the conservatory at the moment. I was inspired by Virginia Woolf to turn my comfortable chair round, so that I now look out at the back garden rather than through the house. I can see the results of Jane and Bryan's recent hard work. Autumn clearance is always tough because you have to be quite ruthless with the plants which haven't QUITE finished flowering, to make room for the spring plants. Actually we've left a few for the surprisingly late butterflies that have been hanging around. We're hoping there's enough warmth in the ground still to germinate the grass seed sown where the undergrowth was cleared away. I learned this week a new meaning of 'mellow'. Colin tells me that it's what his father used to call apples which aren't crisp - and he ought to know being from one of the local farming families. Anyway, mellow apples suit me, because they're easier now for me to chew and swallow than those horrible Granny Greens. I doubt whether that was what Keats had in mind when he talked about 'mellow fruitfulness' - but you never know.

Tuesday, 27 October 2009

Thank you to those of you who wrote to a member of the House of Lords about the introduction of an amendment last night to legalise assisted suicide. I'm glad to say it was withdrawn. As the Christian Concern for our Nation reports: "The amendment was opposed by a majority of those Lords who spoke in the debate.

"In giving concluding remarks, Lord Bach said that their ‘firm view remains that the Coroners and Justice Bill has never been, and is not now the appropriate vehicle for change in the criminal law as it applies to assisted suicide.’

"Baroness Campbell of Surbiton expressed her concerns with the amendment. She said:‘If we support this amendment today, we say that terminally ill and severely disabled people do not deserve the very best forum and process to deliberate their life and death choices. The amendment has profound, far-reaching consequences, which strike fear — I am afraid it is fear — and apprehension into the lives of those who struggle to make society recognise that their lives have value and should be supported.’

"Lord Tebbit said that the law provides that we, as individuals, have no right to take life except in self-defence.‘It provides that the state, in acting for society, may take life or license the taking of life only in defence of the state or society itself. In short, the right or obligation to take life, or to license the taking of life, is strictly fettered and confined, and I believe that it should be so,’ he said. ‘Many of those who regard humankind as no more than elevated animals are no less wary of fraying and fretting at those constraints than those who believe that life is God-granted and that the taking of life is to infringe on divine territory."

John, a friend of mine with progressive MND, sent this on to me. It's not great literature but I echo its sentiments. Some might consider it too simple, but when you get it from a man who's acutely aware of his own brokenness it gains an added depth:

'An elderly Chinese woman had two large pots, each hung on either end of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

'For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do. After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. "I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house."

'The old woman smiled, "Did you notice that there are flowers on your side of the path, but not on the other pot's side? That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house."

'Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are and look for the good in them.

'SO, to all of my crackpot friends, have a great day - and remember to smell the flowers on your side of the path!'

Monday, 26 October 2009

Sunday brought terrible news from Baghdad, where Andrew White is vicar of St George's Church, which is in Haifa Street. (You may remember he wrote the foreword to My Donkeybody.) Here's what Andrew wrote:'I am very sorry to tell you that the two major bomb explosions in Baghdad this morning have done serious damage to the church compound, the clinic, the bookshop, the school rooms and the mothers' union buildings. 'The windows were replaced after the bombings on 19 August, but they have been destroyed again, and this blast hit the church much more powerfully. Even the window frames and the doors were blown out. All of the cars in the compound and the Danish Memorial were destroyed. 'And the clinic? The St George's clinic provides free medical and dental treatment to people in Iraq, regardless of their religious or ethnic background. It is staffed by a team of medics representing each of the Abramic faiths: Muslim, Christian and Jew. It contained high quality medical equipment provided by charitable donations to the Foundation for Relief and Reconciliation in the Middle East. In a moment, much of this equipment has been destroyed, placing it permanently out of reach of the Iraqi people who need it so desperately.'Outside the church, at least 132 people were killed and over 600 injured. Destroyed fragments of their bodies have been thrown through windows of the church, making the clean-up operation yet more unpleasant. Many of our staff and church members remain unaccounted for. Lay Pastor Faiz and I have been trying in vain to reach them by telephone.

'Today was a terrible day for us. But even in the blood and trauma and turmoil, there are things for which we can, and indeed must, praise our G-d. The carnage was terrible, but it could have been even worse.- At 10.30am this morning, when the bombs exploded, there was no-one in the church. If the bomb had been just a few hours later, the glass from the windows would have ripped through the congregation causing terrible human damage. - Yesterday an enormous tree fell down outside the church, which prevented the suicide bomber from detonating his explosives where they would have caused maximum damage.

'Some people ask us whether days like today make us want to give up. We have seen much of what we have worked for destroyed. We have seen people we love bereaved. But the truth is, it is days like today that remind us why our work in Iraq is absolutely essential. 'We must continue to provide a place of worship for Iraqi Christians. We must continue to treat the medical needs of Iraqi civilians. And we must continue to engage with the senior religious leaders from across the sectarian divides, working with them to challenge the belief systems that lie behind this terrible slaughter.'We will not stop because of this. Will you stand with us and help us to restore what was destroyed?'

Sunday, 25 October 2009

There was a rather smart TV in Willow Barn, and so I watched more television than normal which included the not very informative interview by Piers Morgan with Cliff Richard. Among other things we were treated to a single game of amateur tennis. The best bit was Sir Cliff's answer when Mr Morgan was probing about his sexuality. It went something like, PM: 'But what about your close friends? What do you tell them? You must discuss it -' CR: 'My real friends wouldn't even ask me about it.'

We didn't actually watch the much hyped 'Question Time' with Mr Griffin of the BNP. For one thing it's after my bedtime, and for another we probably wouldn't have got to sleep afterwards. But I did watch it on iPlayer when we got home. As one of the Strictly judges might have said, 'What a disaster.' I have seldom seen a worse-managed programme. If the BBC really did need to give a hearing to the half-baked populist views of the BNP - which I doubt - they could hardly have done a better job. Mr Griffin scarcely needed to say anything to portray himself as a pilloried martyr. Which, at present, is all that's required to further the unpleasant agenda of the party. 'Here we are, invited to take part in the "flagship" political discussion programme of the elite establishment; and they skew the whole programme to be an attack on us - on the grounds that the furore they've fostered has become the main and overriding news-story of the week.' The BBC should know, from Strictly Come Dancing, that the British public always votes for the underdog. If on the other hand they were being really impartial, they should have preserved the normal balance of the programme. And I'm afraid that the other panellists didn't really shine. 'Badly done, BBC, badly done.'

And finally I dozily listened to the Sunday programme this morning with an item about the Pope making it easier for Anglican priests and parishes who don't want to serve under a woman bishop to be welcomed into the Catholic Church. I suspect that it might be a timely invitation.

Thought you might like to see evidence of our break in South Somerset. So here are two pictures, one near the back entrance to the Stourhead estate. (The car parks were so full the day we visited, we didn't bother to go in and had a picnic round the back. Jane went for a wander and took this picture of one of the wells in Six Wells valley: ?'St Peter's Pump'.) We've been to the gardens before - which were made by some of our friend, Charlie Hoare's ancestors.

The other one is at Barrington Court, which has nice formal gardens. Interesting place, rescued from dereliction in the 1920s, by a Colonel Lyle (of Tate & Lyle fame). It hasn't got any furniture in it - which means you can see the panelling etc. and then have to use your imagination. As you can see, I had a classic-car of an electric scooter, which curiously turned out to be the most comfortable of the different scooters I've borrowed. Nice restaurant too where we had some lunch.

Friday, 23 October 2009

We've just returned from a great week's break in the Vale of Blackmore (Somerset/Dorset border). We found Willow and Little Barns soon after I was diagnosed with MND and stairs were becoming difficult. They are both on one level, immaculately presented and warm (which suits me). Among the good things about Cucklington is the fact that it's bang in the middle of National Trust properties, like Stourhead. It's not far from Yeovil which is where Westland helicopters are made and Yeovilton where a lot are based. You'd think that there was a lot of noise, but... actually we only saw them overhead on our first afternoon. And it's a peaceful place. Funnily enough on Wednesday I was talking to my brother-in-law about the fact that it's pretty hit and miss finding disabled friendly holiday accommodation in the area where he lives, the New Forest. Anyway, Willow Barn is recommended: http://www.willowbarns.com/.

Coming back, opened my 70 emails. One of them contained the great news that Memories Never Die will be launched tomorrow. It's the story of Del Deanus, who used to play with Spurs Youth and went on to football management, but contracted MND really young. He and a good friend Jerry Lyons have written his story, with a foreword by Nick Barmby who used to play with him. I've been following their progress since they started this spring. You can find a link on my profile.

Another email told me that there's about to be another attempt to legalise assisted suicide next week in the House of Lords. I suspect you didn't know about this attempt to sneak in under the radar another amendment to the Coroners and Justice Bill. Lord Alderdice has tabled an amendment which may be voted on on 26th or 28th October. It says: 'Exceptions to offence of assisting suicideNotwithstanding sections 53, 54 and 55, no offence shall have been committed if assistance, is given to a person to commit suicide who is suffering from a confirmed, incurable and disabling illness which prevents them from carrying through their own wish to bring their life to a close, if the person has received certification from a coroner who has investigated the circumstances, and satisfied himself that it is indeed the free and settled wish of the person that they bring their life to a close.’ So much for the protestations from the euthanasia campaigners that they want a full public debate on the subject! Send an email to your local member of the House of Lords to encourage them to vote. (You can find details on the Care Not Killing website.)

I'm sorry to keep on about this and asking you to do things. But it IS very important, I think. As well as the DPP's guidelines, you can also make your view known quite significantly on the University of Bath's website, because Lord Joffe, pro-assisted suicide campaigner, is giving a free public lecture entitled Assisted Dying: Rights, Choices and Palliative Care on Tuesday 27 October, at the University of Bath. Lord Joffe believes that there is an 'urgent need' to change the law to legalise Assisted Dying and will argue in his lecture that assisted dying and palliative care are essential and complementary aspects of care for people suffering from painful incurable diseases. The University has given the public a chance to have their own say on assisted dying and posted a poll on their site. The poll will close on Monday 26 October and the results will be published online. Please vote below now (and, if you have a spare moment, why not leave a brief comment on their page too?)POLL Should assisted dying be legalised for the terminally ill?please follow this link, then click ‘vote now’ and vote NO.http://www.bath.ac.uk/news/2009/10/14/joffe/ . That is such a positive opportunity to engage in real debate.

Wednesday, 14 October 2009

Well, the deed is done. No pain, no gain - as a former PM once said, and as I comforted Jane, when we viewed the scene. It looked rather like a vicious haircut. In fact, we're rather pleased at the job Tom and Mark of Workwood did today. The laburnum was taken down, dogwood gone, hazel coppiced etc - and you can see the result. There'll be replacements shortly, when we dig the holes - and grass, of course. I'm sure you'll be concerned to know how Romeo the robin has reacted. His initial response was favourable; he joined in with the work and enjoyed the pickings. Whether he'll find somewhere to perch to serenade us at night next year remains to be seen....

Meanwhile Sir Terry Tesco has been having a go at schools and teachers. Here we go again. Well, I suppose those immensely generous tokens which schools have to collect by the million to get books and computers give him some right. But come on, Sir Tel, get real. You have more than enough cash to train up your till-keepers, shelf-stackers and trolley-pushers. You could take them to Ph D. You could afford to cash-roll a whole university if you wanted. And I won't comment on how late Rachel got her Tesco home delivery a week or two ago.

Saturday, 10 October 2009

This weekend ALL the family has joined us to celebrate - prematurely - Jane's birthday. It's always fun when we get together, even if I tend to be more of a spectator than of any use. So tonight it's another banquet from Wenhams inc. Hope Jane enjoys it. She will, of course.

Traditionally the summer months were known as the silly season for news stories. It seems that it's extending into autumn this year. For me the big one is the hullabaloo about Barack Obama's Nobel Peace Prize. I reckon it's a no-brainer. Even if nominations did have to be in a few days after his election, as I remember it even that soon he had changed the dynamic of global diplomacy from one of shooting from the hip to one of human engagement. It might be that the Iranians are not 'evil' and it might not be most productive to threaten to blow them out of existence. And he has redefined the US government's position on climate change. And started movement again on Israel and Palestine. Admittedly the fruits of his vision have yet to be realised. And, as I said when he was elected, there is a danger in pinning too much hope on one man. HE can't change human nature.

And then there's the media storm over Mr Anton du Beke's gratuitous use of a racist term - three weeks ago. First neither he nor the show deserve such media time. Secondly it should have been dealt with by an apology to Laila Rouass on his part, acceptance on her part, and leaving it behind by both of them. And the press hounds being told to get lost.

And there's the Grove Christmas tree, planted three years ago in the centre of the village - which was cut down by vandals, so everyone thought. It turned out in fact that county council arboriculturalists had felled it arbitrarily. Sorry! They've offered to replace it.

On a more serious note, I must say I agreed with Judge James Allen when he said it would be 'unconscionable' if Christine Gill, an only child, were not to inherit her parents' estate - in spite of the will assigning it all to the RSPCA. Apparently her father had bullied her mother into agreeing to the terms against her own wishes. There is a difference between animals and humans, and people should come first. Animal charities in this country are anything but underfunded. And great though the work of the RSPCA is, I'm really disappointed that they have said they will appeal. Have they, I wonder, been advised by predatory lawyers?

Friday, 9 October 2009

Some Bletchley Park codebreakers were presented with commemorative badges today by the Foreign Secretary to mark 60 years. Readers of my blog and of 'My Donkeybody' may remember that my aunt and godmother worked near the heart of Bletchley Park during the war. She received her veterans' badge a few years back, which she was pleased about. She died earlier this year, and I inherited her badge, which I'm quite proud of. There's going to be a roll of honour at Bletchley Park for the codebreakers who've died - most of them. So if you go there look out for (Diana) Susan Wenham in the list. (http://news.bbc.co.uk/1/hi/uk/8300099.stm)

Talking of books, my proposal for another one was considered by the editorial board of Monarch, the publishers, on Tuesday. My idea was to write it in conjunction with Jozanne Moss, the mum from South Africa who has MND. She's written about her experience and her faith, and I wanted to add some reflection about the Christian understanding of illness. I'd sent some sample chapters and an outline to my editor. We held our breath.... Happily the board was enthusiastic about the idea, though suggested rejigging the structure. In a way, it's back to the drawing board for me, though Jozanne's story should remain fairly intact.

Thursday, 8 October 2009

Two days ago the MND Association was 30 years old. At our branch meeting last Friday two of the founder members were there, who you can see on the video produced to mark the occasion. It's intended to encourage people to sign up as volunteers, but gives you quite a vivid idea of how a few people can make a lot of difference. This morning we went to the great local Cornerstone Coffee Shop here (Savile Way, near the Coop), and Margaret came in and told us that a friend of hers, Roger Wakeford, has recently completed a sponsored motor-bike ride across Canada in aid of the MNDA. He's raised more than his target £3,000 (http://www.thisissurreytoday.co.uk/fetcham/Ashcombe-teacher-cross-Canada-charity/article-1084545-detail/article.html).

Meanwhile we enjoyed our coffee and their excellent tiffin, watching the cars come and go in the tree-lined car park, while a red kite wheeled overhead. It's a real gem tucked away in what's an apparently unpromising situation - though actually as we walked (me in the wheelchair) home in the autumn sun we once again appreciated the benign way the estates are laid out: a series of greens surrounded by houses and linked by a network of snickets. We're liking it here. We've ordered our next project in the garden, clearing out the tree-stumps AND the laburnum and the dogwood. Then we're going to plant a gleditsia and an amelanchier, which should lighten up the right-hand side of the garden. The birds may feel bereft for a bit, until the trees get established.... Maybe Romeo the robin might be so miffed that he moves next door - here's hoping!

Sunday, 4 October 2009

On Friday afternoon, we went to the local MNDA branch meeting in the Holiday Inn on the Oxford ringroad. It was good to meet up with other people in the same boat. I was delighted to meet Peter Durkin who keeps a number of us smiling with his seemingly endless stream of jokes. Before MND hit him he used to teach geography. The main item was a talk by Rose Prince who writes about food for the Telegraph and judges the BBC's Food and Farming awards. She was refreshingly down to earth. She didn't have much time for all the latest food fads. 'Super foods' are bunkum! And I was pleased that she debunked the myth about butter being so bad for you. Did you know that in Dijon they have one of the lowest incidences of cardio-vascular disease in Europe - and one of the highest consumptions of butter? Not because of their red wine consumption, which is high, but because of the variety in their diet. I celebrated with a scone, cream and strawberry jam at the end. And I'm back on butter for breakfast. Yippee!

And, hallelujah! 'Songs of Praise' was back to its former best last night. After I posted about it on Facebook, Jules commented, 'I don't usually watch, but felt I should tune in last night, and I am glad I did! Wow! Wish all churches were as amazing at proclaiming the good news about Jesus as that one seems to be.Real life, real people, real testimonies, the reality of Jesus in their lives was great to see!' Couldn't have put it better myself. It came from Peterborough. Full of people enjoying worship 'vertically' as Noel Richards put it, but also 'horizontally' i.e. getting involved in making a difference in their community + a touching account of God transforming someone's self image. I've put the iPlayer link up. Give yourself a tonic and watch it. More, please, auntie Beeb.

I don't know if you caught the item this morning about Rachel Pooley in the Samoan tsunami. A real good news story. If you look at http://www.bbc.co.uk/programmes/b00n1rb2#synopsis , and then the Breakfast Show chapter 3 you can listen to it. Rachel tells the story of how she and her boy-friend, Tolu Taranaki, got caught in their pick-up as the tidal wave swept over the island. Their car was hit by the water. Tolu smashed the window and caught hold of her hand; he got sucked out but she was left in the car as it filled with pitch black water. "I was trying to breath in the water," she said, mimicking a deep inhale of air, "so I was gulping down water.... Blinded by the wave and inhaling the salty sea, Pooley struggled inside the car to find a way out: "I don't even know how long it was, probably a few minutes, but it just seemed forever."With no sight and no clear exit she lost hope and resigned herself to the inevitable. "I said to myself, Rachel, if this is it, this is it," she said. "If this is you're time to die, that's it."Her body relaxed in the spinning car, she said a little prayer for herself and her boyfriend who had been pulled into the wave."Please let us get out of this," she said. "Don't let us die like this, we just can't.... Then the next thing I saw was daylight and I was able to get out." Commented Shelagh Fogarty, "Sounds like her prayer was answered!" Too true. I notice the BBC website headlines the story, 'Tsunami survivor recalls lucky escape' - listen to the lady, guys.